Life support: when should we accept the dying of the light?

J Brooks Spector

J Brooks Spector

Spector settled in Johannesburg after a career as a US diplomat in Africa and East Asia. He has taught at the U. of the Witwatersrand, been a consultant for an international NGO, run a theatre, and been a commentator for South African and international print/broadcast/online media, in addition to writing for The Daily Maverick from day one. Spector is a Writing Fellow of the Unit of Johannesburg’s Institute for Advanced Studies. He says he learned everything he needs to know about politics from ‘Casablanca.’ Maybe he's cynical about some things, but a late Beethoven string quartet, John Coltrane’s music and a dish of Pad Thai will bring him close to tears.

Anyone who has lost a family member or friend from injury or age – or who has been part of a painful discussion about how to sort through the medical and ethical issues stemming from one’s own age, injury and increasing disability – certainly knows the feeling well. Wrestling with how long is too long on life support is an agonising decision with no easy answers. By J BROOKS SPECTOR.

This writer’s own father passed away about a year ago, and even though that event took place a continent away, from this side of the Atlantic there was much concern between visits to America, about what arrangements had been made already, and who would make what decisions when the time came.

Fortunately, he passed away peacefully while in hospice - and without the imposition of any extreme medical measures. All those difficult decisions about who would decide what, ultimately never needed to be made. But for so many others, such questions become all-consuming ones, and, thanks to contemporary medical advances, they can even stretch to encompass a near-soul-destroying eternity – all without reaching a resolution embraced by all.

While researching this question, it came as something of a shock to realise former Israeli Prime Minister Ariel Sharon has been on constant life support for more than seven years – since the day he suffered a massive stroke and brain haemorrhage on 4 January 2006. Regardless of whether one admired his military fortitude or despaired over his hard-line policies, just imagine: this man has been surrounded by a room filled with state-of-the-art medical equipment literally keeping him alive for years, and then walk a moment in his family’s shoes.

Despite an initial diagnosis that he has been in a persistent vegetative state for years, a new medical judgement is that his brain is in fact showing real neural activity when he is shown pictures of his family or hears the voice of a close family member. As CNN reported this announcement early this year, “The 84-year-old suffered a devastating stroke January 4, 2006, and a brain haemorrhage. He was presumed to be in a vegetative state. But on Monday, a team of surprised neuroscientists and doctors said Sharon's brain appeared to respond when they showed him pictures of his family and had him listen to his son's voice. Doctors also used tactile stimuli to measure Sharon's reaction.”

CNN went on to explain, “When the images of his own home were shown, areas of his brain ‘lit up’ with activity. Doctors then had Sharon's son speak into a device that turned the words into gibberish. Those sounds didn't register in Sharon's brain the same way as when his son actually spoke to him using real words. ‘We know that he can process pictures -- pictures of faces,’ said Dr. Alon Friedman of Ben Gurion University. ‘And he can even differentiate between pictures of faces and pictures of houses, pictures of his family to other objects. He can differentiate between words that were spoken to him by his son, compared to a noise.’ Sharon's brain activity was ‘encouraging’ but ‘subtle,’ according to a release from Israel's Soroka University Medical Center, which conducted the tests last week.”

But of course none of this has given the slightest indication Ariel Sharon will one day rise up and ask what day, month and year it is, somewhat in the manner of Sandra Bullock’s mistaken identity suitor played by Bill Pullman in While You Were Sleeping. Instead, the likelihood is that Sharon will be there for much time still to come.

Or still more tragically, consider the case of Terri Schiavo, the young Florida woman whose ordeal as a comatose patient in a vegetative state finally ended after five years’ worth of court battles that attracted the involvement of a president and became a national litmus test over do not resuscitate (DNR) directives and right to die concerns. In the Schiavo case, the core issue was whether doctors should carry out the decision of Schiavo’s husband to terminate her life support systems, once the doctors diagnosed her as being in a persistent vegetative state.

In response, Terri Schiavo’s parents waged a highly public, prolonged series of legal challenges that produced a seven-year delay before her life support machinery was finally stilled. And all of this came after two early years of unsuccessful speech and physical therapy efforts – even before her husband had first petitioned the court to allow the feeding tube and life support machinery to be removed. When her feeding tube was finally removed on 18 March 2005, she died thirteen days later.

The Schiavo case had involved fourteen separate appeals and numerous motions, petitions, and hearings in the Florida courts; five suits in federal district court; Florida legislation that was ultimately struck down by the Supreme Court of Florida; federal legislation (the Palm Sunday Compromise); and four denials of certiorari [a willingness to hear arguments] from the Supreme Court of the United States. The case also generated highly visible activism from a coalition of America’s vociferous pro-life movement and disability rights groups, and controversial public statements from George W. Bush, opposing any efforts to end Schiavo’s life support interventions, when he had said, “In extraordinary circumstances like this, it is wise to always err on the side of life.”

In fact, similar issues had arisen in two even earlier, highly publicised cases in the US. In the first, a young woman, Karen Quinlan, had lived for years after falling into a vegetative state caused by the ingestion of a near-lethal combination of alcohol and drugs back in 1975, when she was just 21 years old. And in the case of Nancy Cruzan, she was a 25-year-old woman when a 1983 car crash put her into a vegetative state; although she lived nearly eight years before the US Supreme Court finally ruled her parents could withdraw her feeding tube before she passed away.

The problem arising from all this, of course, is that modern medical circumstances could be seen as having outraced the older understandings of morals, the law and medical ethics in dealing with such cases. For millennia, such choices were not relevant to the lives of critically injured people, absent a religious miracle. A massive brain injury meant an early death, even if the heart remained strong. Or, a heart stoppage, even if just for a few moments, similarly marked the end of a man’s life. Major injuries to other vital organs also quickly brought an end to things and diseases like pneumonia took their toll among the aged. But medical technology has considerably changed the rules on us. A heart can be restarted, or even replaced in part - or in its entirety in some cases. The functions of other major organs can be assisted with modern medical knowledge and technology. And that, in turn, has put the rules in flux, making - as the popular description sometimes has it - doctors play God.

In the US at least, Congress finally took a step in the direction of clarifying the rules when it passed into law the “Patient Self-Determination Act” in 1991, mandating hospitals honour an individual's decision in their healthcare from their signing a do not resuscitate (DNR) order for no advanced, heroic measures in the event of a heart’s stopping to beat. But that, of course, has left other areas of controversy still uncertain. What happens when the patient has not given their own advanced directive ahead of any emergency treatment, or how, when and by whom a decision should or must be made when the patient’s brain has ceased to function.

An advance directive or living will is a document written by someone where that individual states his or her wishes for care, in the event they are no longer able to speak for themselves. Alternatively, it is a physician or hospital staff member writes a DNR “physician's order,” based upon wishes previously expressed by the individual in his or her advance directive or living will. If an individual is unable to express his wishes, but has previously appointed an agent, then a physician can write such a DNR “physician's order” at the request of that individual's agent – but someone would still be making a decision other than the patient. For some critics, this could be described as doctors and family “playing God”.

As the authoritative Merck Manual explains, “A do-not-resuscitate (DNR) order placed in a person's medical record by a doctor informs the medical staff that cardiopulmonary resuscitation (CPR) should not be done. This order has been useful in preventing unnecessary and unwanted invasive treatment at the end of life. The success rate of CPR near the end of life is extremely low… [However] A DNR order does not mean ‘do not treat.’ Rather, it means only that CPR will not be done. Other treatments (for example, antibiotic therapy, transfusions, dialysis, or use of a ventilator) that may prolong life can still be provided. Depending on the person's condition, these other treatments are usually more likely to be successful than CPR. Treatment that keeps the person free of pain and comfortable (called palliative care) should always be given.”

But what if there are disagreements among family members over what to do in extremis? The University of Washington’s bioethics program argues, “Ethicists and physicians are divided over how to proceed if the family disagrees. If there is disagreement, every reasonable effort should be made to communicate with the patient or family. In many cases, this will lead to resolution of the conflict. In difficult cases, an ethics consultation can prove helpful. Nevertheless, CPR should generally be provided to such patients, even if judged futile.” Not entirely helpful, that.

In legal terms, while it differs by country, in the US at least, an advance directive and living will are in fact insufficient to necessarily ensure treatment in compliance with a DNR. As the Merck Manual notes, “Living wills and durable powers of attorney for health care are not generally effective in emergency situations.” Moreover, even if a patient has a living will specifying a DNR order, but the appropriate form from the respective state government, co-signed by a physician, does not accompany the DNR or living will, emergency medical personnel will almost certainly attempt to resuscitate the patient under their obligations as health care professionals. Here again there remains a place for those lawyers. Beyond the legalities, of course, there is the question of how DNRs and the failing to carry out heroic measures at the end of a person’s life are evaluated by religious and moral authorities.

In the Jewish tradition, according to medical ethics expert Dr Daniel Eisenberg, “The question of ‘do not resuscitate’ orders is complex, yet fascinating. The Torah commandment of ‘do not stand by idly while your neighbour’s blood is being spilled’… would seem to mandate compulsory resuscitation of everyone, since cardiac arrest and apnea certainly represent the ultimate in dangerous situations. Why then was it not always the custom to attempt CPR on every Jew who died? The reason is because Judaism recognises the inevitability of death.”

Meanwhile, the Roman Catholic Church’s Culture of Life Foundation explains, “The Church does not explicitly address the morality of a ‘do-not-resuscitate order,’ but it still uses the distinction between ‘ordinary’ or ‘proportionate’ (=morally obligatory) and ‘extraordinary’ or ‘disproportionate’ (=morally not obligatory) treatments. Moreover the Church clearly teaches that it is morally wrong to impose on anyone the obligation to accept treatments that impose undue burdens on him, his family, and the wider community or to accept treatments that do not offer reasonable benefits or are useless or futile.”

And a group of Muslim medical and ethics scholars have explained, “In Islamic societies euthanasia and assisted suicides are forbidden. But the wishes of patient not to have his dying prolonged artificially with the presence of hopeless prognosis are well preserved.”

Specifically in South Africa, according to an article in the South African Medical Journal by law professor David McQuoid-Mason, “The Constitution and the National Health Act provide that nobody shall be refused emergency medical treatment. The National Health Act does not define emergency medical treatment, but the Constitutional Court defines it as ‘a dramatic, sudden situation or event, which is of passing nature in terms of time’ that can be cured through medical treatment.”

McQuoid-Mason goes on to write, “Emergency medical treatment therefore refers to acute episodes that can be rectified, rather than chronic incurable illnesses. The need for emergency medical treatment arises when a person is faced with the real possibility of death, serious bodily injury or deterioration in health resulting from a sudden situation or event, but not as a result of a chronic illness. A patient at the end of a chronic illness, even though faced with the real possibility of death, would therefore not be entitled to emergency medical treatment as required by the Constitution. However, palliative care would still be allowed…”

He adds, “DNR orders are only issued in situations where attempts to apply cardiopulmonary resuscitation (CPR) would be futile or against the wishes of the patient or persons legally able to consent on the patient’s behalf. Such orders only apply to CPR and do not affect other treatments such as pain relief, medicines or nutrition… Determining futile treatment in the context of whether a person will survive or not is usually not difficult. Difficulties arise in the context of quality of life prognoses. In passive euthanasia situations, the South African courts have equated the artificial feeding of a patient in a persistent vegetative state (PVS) to medical treatment, and it may be discontinued if judged by society’s legal convictions it ‘did not serve the purpose of supporting human life as is commonly known’.”

But, of course, what none of these discussions offer clear answers about when or if a patient will be able to decide when enough is enough, let alone when a patient’s agent or relatives may make this decision for a patient who is unable to act for himself – or if those relatives or agents will do so when the times comes. And these are still the questions that still underlie the current circumstances for those who must ultimately decide on behalf of one particular patient in Pretoria’s Heart Hospital.

Perhaps Dylan Thomas understood these quandaries and expressed them for us all in “Do Not Go Gentle Into That Good Night”, although he, too, left uncertain as to when that night must finally come. As Thomas wrote:

Spector settled in Johannesburg after a career as a US diplomat in Africa and East Asia. He has taught at the U. of the Witwatersrand, been a consultant for an international NGO, run a theatre, and been a commentator for South African and international print/broadcast/online media, in addition to writing for The Daily Maverick from day one. Spector is a Writing Fellow of the Unit of Johannesburg’s Institute for Advanced Studies. He says he learned everything he needs to know about politics from ‘Casablanca.’ Maybe he's cynical about some things, but a late Beethoven string quartet, John Coltrane’s music and a dish of Pad Thai will bring him close to tears.

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